New here Is there any one out there who is on felbamate?

[Nikola]

Hi There,

I will introduce my self. I am a mother of five children ages 10, 9, 8, 6, and 3.
My daughter, Kendra who is nine was born absence seizures. She at one point was having 100 plus a day. The story is very long so I will keep it short.
We are today down to 5 to 15 a week. I thank Falbamate and prayer for this. She has olny been doing this good for about 8 weeks. My only fear is that after she is on it for some time that the seizures will come back full force. That is what has happend with anything else that has half worked. The other problem we have is the side affects. She is losing weight and has a hard time sleeping but is always tired.

Thank you,
Nikola

 

[Dutch mom]

Welcome on CWE Nicola,

My son has the Lennox Gastaut syndrome and has used felbamate (> 5 years ago) for a short period as a last try on AEDs. We've decided to stop felbamate after we found out about the dangerous side effects this drug can have. Side effects that can be irreversable and even can occur after discontinuing the drug.
This was the point we've deceided to wean off AEDs and to try the ketogenic diet, since our son seemed to be med resistant. The ketogenic diet appeared to be a real wonder for our boy, he's on this diet for allmost 6 years now with significant seizure reduction and drug free.

I know of several kids on felbamate and for some of them this med is very effective. I've read about fatique and sleeping problems. I also know of some Dutch kids who discontinued felbamate because of reduction of white blood cells in the bones and aplastic anemia.

When taking Felbatol, be alert for signs of a very rare but dangerous side effect called aplastic anemia, in which the red blood cell count declines drastically. Warning signs include weakness, fatigue, and a tendency to easily bruise or bleed.
Felbatol has also been known to cause fatal cases of liver failure. Warning signs of a liver problem include dark urine, loss of appetite, stomach upset, and yellow skin or eyes. Alert the doctor immediately if you develop these symptoms. The sooner Felbatol is discontinued, the better your chances of recovery.
http://www.drugs.com/pdr/FELBAMATE.html

Felbamate
In 1993 the efficacy of felbamate (FBM) was documented in a double-blind, placebo-controlled trial.36 Seizure frequency was assessed by guardian report and by serial 4-hour EEG-video monitoring sessions during the course of the study. FBM significantly reduced the number of atonic seizures compared to placebo in both the treatment (p = 0.01) and the maintenance (p = 0.002) phases of the study. Of the 37 patients who received FBM, 3 were without atonic seizures during the treatment phase, and 5 had no atonic seizures during the maintenance phase. A dose-response relationship was demonstrated for reduction of atonic seizures, with a linear reduction in the number of atonic seizures per day with increasing plasma FBM levels. There was a statistically significant reduction in seizure frequency for all seizure types among the FBM-treated patients compared to those who received placebo (p = 0.002).
‘Global evaluations’ of patient functioning and neuropsychological tests were performed on all study subjects in order to assess non-seizure-related outcomes. The global evaluation scores during the maintenance period were significantly higher (p < 0.001) among the FBM group than the placebo group.
Dodson reported the 12-month open-label study of FBM that followed the clinical trial.37 Those who converted from placebo to FBM had the same degree of improvement on FBM as those who received FBM during the trial. At the end of the double-blind trial only 2 of the 22 subjects randomized to placebo had experienced a > 50% reduction in atonic seizure. However, during the first month that these patients from the placebo group were treated with FBM 12 of the 22 subjects (55%) had a > 50% reduction in atonic seizures. Combining both the groups of patients from the randomized double-blind trial in the follow-on study, 33 of 50 or approximately two-thirds had a > 50% reduction of atonic seizures 12 months after beginning the open-label study.
No pattern of serious adverse events due to FBM was apparent at the time of FDA approval in 1993. By the summer of 1994 120,000 patients had been exposed to FBM and reports of both aplastic anemia and hepatic failure had been reported to Wallace Laboratories and the FDA. After letters had been sent to over 200,000 physicians in the USA informing them of these new risks, most patients were withdrawn from FBM and the use of FBM in LGS declined.
Over the last four years analysis of the available data have led to a better estimate of the risk of FBM. Kaufman, et.al. reviewed all case reports of aplastic anemia among patients treated with FBM. The incidence of aplastic anemia among those treated with FBM was estimated to have a lower limit of 1 per 37,037 patients and an upper limit of 1 per 4784 patients, with a "most probable" incidence of 1 per 7874 patients treated.38
Pellock and Brodie estimated that the incidence of hepatotoxicity to be about 1 per 26,000–34,000 patients treated with FBM39 – similar to the recently reported risk of hepatotoxicity for valproate (VPA).40 No children under the age of 13 years have been reported to have FBM-related aplastic anemia. Female sex, history of immune disorders (e.g., lupus), a history of prior blood dyscrasias, and allergic reactions to medications are probably associated with increased risk for FBM-associated aplastic anemia. These factors may later prove helpful in selecting patients for FBM treatment.
http://neurologia.rediris.es/congreso-1/conferencias/epilepsia-8.html

Another usefull link:
http://professionals.epilepsy.com/page/hc_felbate.html

 

[LivingFruity]

Hi Nikola :hello: Welcome to CWE! I don't have experience with felbamate, but I do know that there are other alternative options available to your daughter if you are concerned about the side effects. We were worried about the effects of AEDs on our son, so we're working on restoring his health through diet(not ketogenic), nutrition, and natural therapies. We have great success in controlling his seizures this way.

Make yourself at home and have a look around. There's all sorts of information available here

 

[Bernard]

... My daughter, Kendra who is nine was born absence seizures.

Hi Nikola, welcome to the forum. :hello:

My wife used to have multiple daily absence seizures as well. She hasn't had one in over a decade now, though, since she used EEG neurofeedback the first time. I highly recommend looking into it.